Wednesday, December 22, 2010

I made these for coworkers last night, to pass out with Christmas cards:

Maybe I should have brought some in to work for me today. Now I want one.

I managed to only eat TWO of them while they were still warm. I'm thinking I deserve a small medal - or a blue ribbon? - for such epic self-restraint.

All's been mostly quiet on the blogging front, I'm afraid. Not a lot going on for me to report to the wider world. (Except cookie baking, of course. Happy to report that.) Our office closes down for the holiday, so today's my last day of work until 2011. I'll be at #dsma tonight, but probably won't "talk" to most of you until I'm back at the office - B and I are doing a staycation Christmas in Brooklyn! There will be lots of pajamas (my new ones arrived Monday!), lots of cooking (anyone got a good vegetarian recipe for main-course Christmas?!), and hopefully some Grinch-watching.

Hope you and yours have a very merry, and a most wonderful start to the New Year!

Wednesday, December 8, 2010

I ALWAYS use my pump clip (unless I'm in a dress and rockin' my awesome thigh holster). This morning, in my usual ohmygodhurryhurryRUSH! spaz to get out the door on time, I completely forgot to put on the clip. And lemme tell ya, my pump hates to be all warm and snuggly close to my skin. Every time I use my holster or tuck that puppy into a pocket, my BGs float up and stubbornly refuse to budge out of the 140s range.

My office solution to keep the pump secure and cool as a cucumber? Ta-dah:

Thursday, December 2, 2010

Today marks the 17th anniversary of my diagnosis - 17 whole years, kids! Years of all the stabbing, poking, and bloodletting involved in the maintenance of my Type 1 jalopy. Years of battling the food 5-0, keeping up with advances in medical technology, and becoming more engaged in the D community. Years in which I somehow shifted from a 15-year-old kid whammied by the fickle finger of fate to a self-sufficient adult who might be a little more cyborg than she'd like.

Oh, how I loved Laugh-In.

How in the hell has so much time passed?! It feels like just yesterday I was sobbing in Hannaford's jelly aisle, totally overwhelmed at all the sugar in the foods I loved to eat, completely unable to wrap my head around my brand-new disease, and feeling oh-so-alone and incapable of handling things. And now here I am, writing a dblog post while plugged in to my pump and Dexcom, smugly pleased that the cheese I just noshed should have zero effect on my current smooth-sailing CGM graph.

I love cheese WAY more than Laugh-In. Mmm. Cheese.

Every December 2nd is like my diabetes New Year. I take some time to sit back and reflect on where I am and where I'd like to be, to count my lucky stars for the insurance I have, to toss out a big fat thanks to the cosmos for having people who love me and want me to be healthy and happy. (B, I'm looking at you, dude.) This year, I'm going to embrace the New Year and resolve to:

1. Not beat myself up so much. It's counterproductive, and I'd like to avoid bursting into tears at my next endo appointment when I get good news. (Bad news? No promises. But good news?! That's just ridiculous.)

2. Test more often, and more randomly. My meter is a solid 10-20 points higher than Dex because I test more often when I'm trying to bludgeon my BG down into a normal range.

3. Prioritize staying in touch with you crazy, wonderful, cupcake- and bacon-obsessed DOC folks. It's important. It keeps me focused...but not stalker- or serial killer-level focused. More like a relaxed, calm person who's in control but not insane about it focused.

4. Move more. My BGs will thank me for it.

5. Buy new gear: an updated medical ID tag, and a less fugly meter case.

Now don't get all worried about the woo-woo level here. You'll be relieved to know it's not all about hand-holding, singing kumbaya, and getting in touch with my feelings. Every December I also like to throw myself a little "It's my party and I'll be high if I want to" gathering - sometimes it's a trip to an ice-cream place, sometimes it's a date with appalling quantities of pizza, and sometimes it's a multicourse dessert potluck at home. But whatever it is, the point of the diaversary celebration is the same. It's my chance to flip the bird at my D, at that fickle finger of fate, and say SCREW YOU, DISEASE! I'm still okay. Sometimes it's uphill, sometimes I get lucky, but I'm doing perfectly okay. So bite me. And pass a spoon.

Wednesday, November 17, 2010

October started off with the intense awesomeness of Team Hoffmanderson's record-busting turn at the JDRF Walk...and then it took a deep nosedive into Month from Hell territory.

A crapfest of late hours to meet deadlines at work, on top of the load of papers and presentations for my classes, meant the D got moved to the back burner. The waaaaaaay back burner. For the first time since April, I stopped logging. Dinners became popcorn or Luna bars or some leftover Halloween candy someone brought into the office - and those were the good, healthy meals. My meter averages and daily insulin totals skyrocketed, and I was running temp basals half the day to cover blood sugars that didn't want to stay under 140. I went back to full caffeine, worked 12-hour days, fell off the DOC wagon, slept 5 or 6 hours a night, and spontaneously burst into tears one evening while sitting at the computer working on a class project.

Clearly, I was stretched too thin, and taking care of myself dropped to the abysmal bottom of my lengthy to-do list. I know it happens to everyone - not just me, not just PWDs, but truly everyone. But what really pisses me off is just how bad it got. It is tantrum-inducingly unfair that there are repercussions to just living your life, that losing my laserlike focus on diabetes means stewing in my own toxic sludge blood until I get everything under control.

I spent the past five weeks knowing that I wasn't taking care of myself, self-lecturing about getting a grip, and completely dreading yesterday's endo and ophthalmology appointment. How could this be anything but a self-loathing shamefest about how far I'd fallen from my 6.2 in July?

Well, folks, somehow I managed to pull a 5.6 A1C out of the disastrous past 5 weeks. I cried when she told me. Not tears of joy, mind you - more like the kind of emotional freakout you have when you just barely avoid a car accident. Because I know she's all "yay! nice work!" and all I can think is that it can't be right. Or if it is right, it's dishonest. I know what kind of work I was doing, what my Dex graphs looked like, and how I was eating, and it all smacked terribly of pretty dark places I've been before: the aforementioned self-loathing shamefest.

The SLSF - both past and present - is something for another post, though. I'm still trying to wrap my brain around it, to figure out what it means and how I can possibly short-circuit it. In the meantime, though, the Month from Hell is over now. I'm dusting off @kahoffman and I'm actually posting to this ol' blog - if I've learned nothing else in my weeks away, it's that my connection to the DOC is incredibly important and dreadfully underestimated by yours truly. Knowing you're all out there - doing #bgwed, talking about gushers, trading tips, and wishing for cupcakes just like I am - does more for me than logging and endos and all the "being good" in the world.

Monday, October 11, 2010

Last weekend was the JDRF's Manhattan Walk to Cure Diabetes. I've been walking since I moved to New York (10 years of fundraising!) and B's been on the team since we met in 2005. Every year, we raise a bit more money and every year I am just completely mushed by the generosity and complete amazingness of the people in our lives. Coworkers, families, and friends always answer our pleas for donations with open hearts and wallets, and it's touching to see what happens when everyone gets together for a good cause:

Pump? Check. Dexcom? Check. Amazing friends, family, husband? Check.

On Walk day itself, Team Hoffmanderson had raised a whopping $5,633 - you can tell by the obnoxious DayGlo signs I made and carried around! It was a HUGE amount, and a jaw-dropping record for us. (We even crushed the record set from our wedding registry fundraising, and I never thought we'd get there.) At press time, the Team has raised more than $6,000, and I imagine we'll have even more once corporate matches come in.

But it's not just about the donations. The money's important, of course, and that's why we do the Walk year after year. It's not why I love doing the Walk, though. If you have diabetes, you know that we all wear our disease a little differently. Some of us are full-on advocates, some of us blog about the D right with the latest book we're reading or the antics of our yoga class. We run the gamut from full-frontal tubing to discreet spots in which to tuck our pump, from telling anyone and everyone we're a PWD to keeping it private. Me? I'm a little bit of both. I wear my gear loud and proud, and most everyone who knows me knows I'm Type 1. No one's ever called me shy. But like Karen over at Bitter-Sweet, I'm a liar liar pants on fire. I don't really talk with people about how awful diabetes is, or how scared I am of complications, or how much work keeping myself alive is - I don't like to talk about the bad stuff because I don't want to be seen as sick.

But every fall, I do talk about it. I talk about the complications, the staggering number of us with diabetes, the number of kids getting diagnosed every day, the sheer magnitude of finger sticks and set changes and other stabby moments in the day of a PWD. I talk about these things and it makes my skin itch - I'm hugely uncomfortable with it, and I have to set my jaw and do it anyway because it's important.

And every year, the outpouring of support just knocks me over. I'm lucky in so very many ways, and the JDRF Walk to Cure Diabetes reminds me of that. Thanks to everyone who donated or wished us luck, and extra thanks to the members of Team Hoffmanderson:

Thursday, September 30, 2010

I think I need to start doing a 40/60 dual wave - the MEF backlash always happens because I tank shortly after eating my meal...and then have to chug some juice and stop my square 3-hour delivery for fear of killing myself. Right around midnight I start to pay for my error. And then, of course, I aggressively correct that sucker upon waking and end up low on the subway.

Wednesday, September 29, 2010

Today's Google reader yielded up a lot of food for thought from the DOC.

The first was Holly's post over at Arnold and Me about her changing basal rates as autumn kicks in. I've been seeing a running theme on Twitter about basal increases the past couple weeks, and so it's already been kicking around my head. I'm not having the same issue (at least not yet), but I find myself completely intrigued by the idea. What could possibly cause such a thing?! Logically - and we all know the D has very little to do with logic - you'd think the cooler weather would be better for insulin efficacy, site adhesion, and all the rest of that. Seems it isn't so, though. Could it be a slight change in diet (more cooked foods, less cold salads and whatnot)? Being a tiny bit more sedentary (warm blankets and the couch instead of being outside)? Or do our bodies actually do a change in hormones for the season/change in light? Like I said, I can't stop wondering. It's like poking at a loose tooth.

The second interesting post, for me at least, was at Diabetesmine: Beyond Fingersticks: Airing CGM’s Dirty Little Secrets. The brief book review was great, but it was the "CGM as the Third Revolution in diabetes management" (after insulin and home glucose monitoring) that really stuck with me.

I know that my Dexcom has completely and totally changed the way I approach my diabetes management. I've been doing this for 16 years, have seen countless CDEs and endocrinologists, read all the literature, filled out endless logbooks, counted carbs, injected/bolused insulin, grappled with the aftereffects of high and low blood sugars, and even found small bleeds in my eyes - and nothing in all of that has made me more hyperaware of what living with this disease looks like minute by minute.

When I'm not hooked up to a sensor, it's easy to ignore my diabetes - if only for 5 minutes. I can watch a TV show, take a shower, sleep, whatever and not give more than a passing I should do a blood sugar soon thought. But now that I use Dex, I have learned a great deal about how much I was "cheating" the rules and have adjusted a lot of the ways I take care of myself.

Is it weird to want to hug electronic equipment?

For the first time, I'm actually doing my insulin 15-30 minutes before eating so that I can avoid that giant Dex mountain I discovered back in February. For years I've been told to do this, but a thrice-daily "Holy CRAP, look at that postprandial hump!" does wonders to underscore the fact that the doctors were actually right.

I've become more careful about the foods I eat, since I now see how they move my blood sugar, both in speed of rise and change of number. Pizza has always been a MEF, but I'm finding a lot of foods who are secretly in that enemy camp and require devious strategizing to defeat.

I feel safer going about my day knowing that I have the secret insider's scoop about which way my blood sugar is heading.

I'm much more cognizant of how my body is a finely-tuned machine (all those teeny tiny basal changes!), and that's engendered a bit more respect for it than I've had since 1993. This is no small feat. I, like so many in the DOC, have struggled - and will struggle - with food and a sense of deep betrayal. That I feel anything but anger or disappointment or any of the hundreds of bad feelings I've always had about my body and health is an immense shift. I'm not all the way there, but these are baby steps toward a better disposition and I think my regimen changes have a lot to do with it.

CGM has absolutely been my own Third Revolution, after Humalog/Lantus (eat me, NPH!) and the pump. For me, Dexcom is a complete game-changer, welcome eye-opener, and wonderful-if-annoying prod for accountability. I feel naked without it and rely on it to the point of near obsessiveness. Most amazing of all, though, it gives me hope for what advances might be next and the desire to be as healthy as possible for when they arrive.

Friday, September 24, 2010

I immediately plugged the him into the wall, shut my door, and put in a new sensor (in my thigh! for the first time!). For the record, kids, if you're using the Dexcom write down your transmitter number someplace. That way, when you have 3 days left on a sensor and you have to replace your receiver, you can just restart the damned thing instead of putting in a new one so you can see what your ID number is. Like I had to do.

Unlike my last go round with Dex Jr. - I'm an old pro at this now! Being on receiver #3 since February will do that to a girl - my new gear came with a new item:

It TOTALLY looks like a pee cup.

I was confused for just a moment, and then I realized they didn't want me to send them urine. They wanted their used sensor back. (Ew.) I had to have B fish that little sucker out of the garbage at home (ew, again), but it shall be sent off to California on Monday.

Let's see if we can get more than a handful of months out of this one, hmm?

Thursday, September 23, 2010

Last weekend, B and I took off upstate for one of my best friend's weddings. (We've been friends since 8th grade!) Not only was I ridiculously excited to be heading to home territory, I was also going to be in the wedding party AND would get to see B in his brand-new foxy suit. The weekend was bound to be amazing.

And it was! For the most part, everything was pretty smooth sailing:

The tailor put a hidey-hole "pocket" in my dress that was completely invisible but allowed for easy access to the pump clipped to my Spanx. (Alas, no true pocket - the matte satin and cut of the dress simply did not allow for pump bulge.) I'd been nervous about trusting my cuff for all the dancing and walking down aisles I had on my agenda, and I think this was the perfect solution. If only I could afford to have her put faux pockets in all my dresses

I remembered all my supplies. Well, except for the Dexcom charger. Which sucked, since it would have been nice to have that information during a weekend of different eating habits and restricted access to food and meter.

My hair and makeup - while quite over the top for me - didn't make me look like some strange Barbie version of myself. It did, apparently, make me look like a "naughty librarian" though. Oh, the laughing from our table mates when we heard THAT one from another guest...

The mushroom tart I had for dinner was AMAZING. (Although there was a bit of a disaster post-ceremony where I accidentally ate something with crab in it and thought I was going to projectile vomit all over the pretty wedding party.)

So many of the people I'd met over the past few months, and the new ones I met for the weekend, were great. A lot of folks I thought "I could be friends with this person if I met them at home." Not surprising that someone I love so much has a lot of wonderful people in her life, but it still made me really happy to see.

All those wonderful things, though, and I couldn't help but feel a little sad that it couldn't just be normal. That I had to get a pocket sewn into my dress, that I worried about my pump and the sweat from dancing, that I had to carry the biggest purse around for my meter and other D-necessaries, that I kept checking for VPL (Visible Pump Lump), that I was too shamed by my all-over BGs and eating to send the logs from the weekend to my CDE, that I even HAD to log while I was sitting in the bridal suite waiting for my turn with the makeup artist, that my numbers kept climbing because of all the excitement about the wedding and my stress about tripping while walking down the aisle (full-length gowns are no joke!), that my diabetes - as usual - took precedence over everything and I couldn't just enjoy the event like everyone else.

So I returned to Brooklyn - my poor, tornado-damaged borough - on Saturday with a bit of a heavy heart. My numbers, as is always the case, reflected my doom and gloom, making mountains and valleys on my log graph and making me feel like I got run over by an MTA bus.

And then Monday happened: happy news from my CDE about the logs from the previous week. Immediately, I was in love with the world again. Working 12-hour days? Pshaw. They loved my numbers! Missed deadlines because of coworkers? No matter - think of that email! I've spent the week swishing and twirling, thrilled at the change in circumstances (and the end of my self-flagellation - I mean, c'mon. She LOVED MY NUMBERS)...until this morning happened: Dex Jr. inexplicably kicked the bucket, shrieking and seizing his way to death as I exited the Q train.

Rough week for Karen and the 'betes - the emotional roller coaster is as bad as the simultaneous BG ups and downs that have accompanied it. I know I'll come back up (always do!), but damned if those dips aren't brutal.

Tuesday, September 14, 2010

I started Suzanne Collins's The Hunger Games Monday morning. I cracked that little guy open - an oh-so-perfectly squat, sturdy hardcover - on the Q train platform, and was completely hooked by the time I arrived in midtown. I flew through the pages during my return to Brooklyn, impatiently finished my freelance work, and then leapt into bed to find out what happens to Katniss.

It's been a long while since I've had a book that makes me scurry to the train, and I'm heartbroken now that I'm finished with Book One. (Yes, in less than 36 hours. Yes, I went to work.) I just couldn't put that chubby little book down, and I'm ashamed I didn't pick up the series sooner - what's not to love about a book that's a little 1984, a little Shirley Jackson's "The Lottery," a little Stephen King's "The Long Walk"?

To some, I know the fervor with which people love these YA-crossover novels seems a bit...odd. After all, don't we have an overwhelming number of novels available for grownups? Aren't there enough adult stories to be devoured and loved? I'd answer that with a resounding yes, but I'd also say that kind of misses the point. Rarely does an adult novel read like Harry Potter or Twilight - a story intended for adults can be well-paced and exciting, of course, but it doesn't seem to breathlessly gallop across the pages like a YA novel does. I read these crossover novels with my fists clenched, holding my breath and cheering on the protagonists. Adult novels can stir great emotion, but YA novels bring me right back to my teenage years and the uncontrollable, buzzing energy of that age. I don't want to just feel when I read these. I want to shout at the pages, hoot with happiness and howl with rage as the occasion requires.

For a few hundred pages, I remember what it's like to read without a lit criticism class swirling in my head, without 16 years of experience telling me how the real world works, without having a perspective that's already pretty formed and solidly reinforced by life. I remember how it feels to read for the pure joy of reading - not because you should check out more works in translation or "Gosh, I never did read Anna Karenina" or some reviewer in the Times raved about the latest doorstopper tome, but because it's exciting to live someone else's life, to try on a new perspective, to visit a new where or when. Reading these novels makes me appreciate my love of reading, and reminds me why it's there in the first place.

Friday, September 10, 2010

I'm not practicing for my aria - I'm just prepping for the blog meme Kerri and otherD-OC members have rolling around the interwebs. It's been a busy week for yours truly, and this couldn't have come at a better time. So, without further ado:

What type of diabetes do you have: Type 1

When were you diagnosed: December 2, 1993. My 17th diaversary is coming up! As it's my favorite number, I'm going to need to come up with some form of celebration....

understands that they might know medicine but I know my body and what it's like to live with this disease

who treats me like I'm an active participant in my own management - that I don't just want to be told what to do, but WHY I'm doing it so that I can take care of myself better and better

What's your biggest diabetes achievement: Going on the pump a year ago. I have a sheer terror of automated medical stuff (for the life of me still can't use any devices for lancets - it's all manual), and I had to summon all my bravery to take that step.

What's your biggest diabetes-related fear: For me personally, blindness. I've already got minimal retinopathy, and I get sick thinking about it getting worse. For others: I want to have kids at some point, and I know I'm going to be a wreck while pregnant (what if my BGs boil the baby?!?) and after (when will B lose me? Will I see my kids grow up?).

Who's on your support team: 1) B's my biggest cheerleader, a source of strength, and the only person I know who routinely makes jokes about my loser/failure pancreas. (Please picture me having to defend the thing. "It's not its fault! It was my overachieving immune system!") I couldn't do half of what I do without him on my team. 2) My other biggie is the D-OC. Cheesy, maybe, but it's been revelatory to "meet" so many people who live with diabetes every day. I didn't go to any camps growing up, didn't know any other T1s. It's only been the past year or two that's brought me into this community and it's been an incredible comfort.

Do you think there will be a cure in your lifetime: No. I think there will be more tech advancements, and we'll get more tools to help us live healthier, longer lives. But I don't think there will be a cure - and if there is, it won't be available to us veterans. Still, preventing others from getting this disease that's such an albatross? I'd be down with that.

What is a "cure" to you: My body being able to regulate its own blood sugars without math, injections, food weighing, finger sticking, sweatbetes, glucose tabs, or anything else from me.

The most annoying thing people say to you about your diabetes is: Oh, GAWD. How can I narrow it down?!?

"But you're not fat!"

"You have it really bad, huh?"

"Are you sure you should eat that?"

"You have diabetes? My grandma/aunt/coworker did, and they died/lost their leg/went blind..."

What is the most common misconception about diabetes:

For people who have it: That it's no big deal. I know too many people who don't take their meds, don't take care of themselves, ignore their disease because it takes sooooo long for those complications to rear their ugly heads. I wish 32-year-old me could go back to 18-year-old me and say "Dude. Don't fuck up in college. That 13 A1c you're gonna get? Yeah. That's going to damage your eyes." I'm sure a lot of suffering people wish they could go back and shake their younger selves.

For people who don't: That it's no big deal. That it's not as deadly as cancer or AIDS, that we all brought it on ourselves, and so it doesn't warrant attention or funding or research. That we should all just stop eating cake and quit our whining.

If you could say one thing to your pancreas, what would it be: I'm sorry my bully immune system murdered you.

Tuesday, August 31, 2010

(Karen gets on the elevator, already occupied by a very tall, very lean man. He leers at her, ostensibly looking her up and down. Her discomfort and "C'mon 24th floor!" thought-bubble are nearly palpable.)

MAN

(locking in with intense eye contact)

Sooo. You're on an insulin pump.

KAREN

(confused, but grateful for familiar territory)

Yes. Yes, I'm on an insulin pump.

MAN

(still staring, still unnerving)

I'm diabetic, too.

(pause)

I don't have a pump.

KAREN

(wondering if he's interested in the pump or judging)

Uh. Yeah? And are...you're on shots?

MAN

Yessss. The poor man's pump.

KAREN

(feeling incredibly guilty, like she was showing off)

Oh. Um. Well, I just started last September? I was on shots for years before that.

Monday, August 30, 2010

B and I were headed upstate yesterday morning for an overnight family outing. We piled into our little Zipcar and hit the road at the bleary-eyed hour of 7:30 for the drive. Somewhere in Queens, however, my usually-silent little friend spoke up:

Dex: BEEEEEEEEEEEEEP, buzz buzz buzz

Huh. The screen was completely blank. Had I sat on it and accidentally shut it off? I restarted, heard the familiar shrill initialization shriek, and kept on driving.

Dex: BEEEEEEEEEEEEEP, buzz buzz buzz

Um. Okay, crankypants. Maybe I'm out of range or something? So I hit clear, and then stuck him between my back and the seat.

Dex: BEEEEEEEEEEEEEP, buzz buzz buzz

Time to call in reinforcements. "B, can you please see what the hell Dex is screaming about?"

Now, neither of us had ever seen this screen before and, as I was going upstate for less than 48 hours, I hadn't packed my instruction book. So! Time to call Dexcom for translation services....survey says: Dex was now the dearly departed. (Sadly, no results from the autopsy will be forthcoming.) Within 10 minutes, our friendly Dexcom customer service rep had put in an order for a new receiver to be delivered to my office.

This should have been a happy ending, I know this, but I was completely stressed out. How was I going to do the next 8 hours of grazing without that receiver by my side? I wouldn't be able to re-up until Tuesday afternoon at the very earliest - that's days of missing data, and heaven knows how many unnecessary (and unaddressed) issues with basals or bolusing or any of the other million things that can go wrong in a day with diabetes. And all right smack-dab in the midst of my attempts to have the tightest numbers I've had since high school!

I felt stranded and a little exposed - like being in the middle of a dream and realizing you're not wearing any pants. And that upset me. How reliant have I become on this little piece of technology? I've only had it 7 months, and yet I started panicking the minute I had to face the idea of not having it. What does it mean for me that I depend so much on it? That I don't feel comfortable or at ease when I'm not "plugged in," that I find myself reaching for it when I'm sleeping or heading to the bathroom, checking to see where I am and to make sure Dex can see me?

As for the actual D, I did what anyone would do, of course. I tested a bit more and tried to keep well on top of everything. My BGs seem fine (those snapshots on my meter, naturally - who knows about the in-betweenies!) for the most part, and I'm really looking forward to being in the office tomorrow morning to start another sensor. In short, this too shall pass.

But I can't stop thinking about my reaction to Dex, Sr.'s death. I'm reliant enough on insulin, Synthroid, my pump, my glucose tabs, all of those things that HAVE to be taken. Do I really need to be dependent on the extracurriculars, too?

Wednesday, August 25, 2010

B: when karen locks it down, karen locks it down. i feel like you should send your graphs with a note that just says "what's my name? fuck YOU! that's my name! you see this graph? this graph cost more than your car!"...because the world needs more diabetes-related references to glengarry glen ross.

Monday, August 23, 2010

Last Monday, I had an appointment with my CDE. As I'm sure you know, such an appointment comes with a little baggage. Not only is she the recipient of all my food/insuling/BG logs (insert dirty, scowling look here), she's also the person I rely on for basal tweaking and nutrition information. I haven't been so thrilled with this interaction as of late, so I'd been dreading the visit. And I'm talking the kind of sheer dread that had my BGs hanging out - sticky, unmoving - in the 180s until dinner time.

I came armed with logs and Dexcom graphs. She - once again - lowered my frakking basal rates. I - once again - felt confused and disappointed, since I knew that lowering them would result in higher average blood sugars for the next three days. She said stay the course, try these new rates, and send my logs in on Friday - she'd share them with my endo, and maybe I'd get my coveted little head pat after that. So I listened to her. After all, she's the professional, right?

Fast forward to Friday. I send her all my logs and this email:

Attached are my logs and Dexcom graphs since we saw each other on Monday.

The two things of note are the BG mountain on Thursday (which is a correction mountain that's the direct result of the graham crackers I overtreated with after over-bolusing for the pasta - I give myself an F and declare to only treat with juice for the rest of my life now) and the weird jump I had last night between midnight and 4 a.m. I had a horrific nightmare that woke me up around 3. I got up, got a drink to shake it off and went to bed. 30 minutes later, my high alarm is going off and I'd jumped from around 80 to 140. Have you ever heard of nightmares doing that before?! So lame!

Anyway, here they are. Please, oh please, tell me something happy!

Her response?

Ok, let’s make these changes:
Change time of 6 am basal to 6:30
Change 9 am to .35
Change 10 pm to .40

I don't know that I can accurately convey how upset I was. No mention of the endo, no explanation of why she's making these reductions in my basals (again!!), no nothing. In the end, I tried to get her to explain exactly what she was trying to achieve with these basal tweaks, and was told she's working on the early morning rather than the overnights. Which was confusing, really, since she was reducing my insulin and I hadn't noticed any lows in the early morning. If anything, I had elevated blood sugars at that time because of my getting-ready-spike. So I, again, asked for clarification. I didn't think it was odd to want to understand the motivations and end goals behind all these basal tweaks...but apparently she did. All I got as a response was "Ok, leave everything the same." Ummm. She wanted to change my basals until I asked her about it? There was a problem with my regimen until I asked for clarification? How in the hell does that make any sense?

Needless to say, I was furious. Still am, in fact. Enough so that I'm on the cusp of staging my own little revolution to reclaim my Diabetes Queendom. No one knows my body like I do. No one knows where I cheat, where I'm SWAGing, where I had a stressful meeting or didn't wait quite long enough between bolus and eating. For that matter, no one else seems to care about these subtleties. So I'm done. I'll send my logs, I'll do my due diligence, but I'll no longer passively accept changes to my regimen. It's been nearly a year since I started on the pump, and it's time I stepped up and stopped letting other people be the boss of me.

Monday, August 16, 2010

B and I have been participating together since we started dating back in 2005, and our Team Hoffmanderson will be doing it again this year (with pump in tow for the first time!). Personally, I've been active here in New York City since 2001, but it's been a lot more fun since my other half became, well, my other half. He gets really into it, and this year is no different:

For the record, I'm wearing a Halloween costume. I was a disco nap.

Every year, I look forward to reading the donation email he sends out to coworkers, friends, and family. The note is often sweet and always funny, but more than that, it's eye-opening to see his gut reaction to something that affects his life in the way it does. He can't have ownership of my disease, obviously, and is often forced to just be patient and offer support (or laughs or cheerleading or pictures of the gatos) when I need it...without being TOO supportive, if you know what I mean. He's good at it - better than anyone else in my life, truly - and walks that very fine line like an expert tightrope walker. Still, I'm never quite sure what all of this looks like through his eyes.

His annual plea for donations, the doggedness with which he pursues them, and the words he chooses (frankly, words even I - with all my knowledge and terrors of what the future might hold for me and my health - find a little on the level of "Whoa! Harsh! Don't freak people out!") give me a glimpse, though, and enough of one to realize my heart probably doesn't want to see much more than that.

I know we'll never truly understand what it's like for the other, how each of us manages life with a disease that takes up a significant spot in our little family. But I do know that we're both a bit scared, a bit angry, a bit (dare I say it?) hopeful, a lot tough...and, more than any of that, we're on the same team.

Wednesday, August 4, 2010

Being a PWD, I wish I could say I was cursing like a Brit. Alas, it's an actual bloody foot. Cue the panic:

I was in the kitchen last night and felt something under my bare foot. Assuming it was a small piece of dried cat food - realistic, as the slobby gatos are forever getting their food all over the place - I just kind of wiped my foot to the side to dislodge it. And felt a sharp stab of pain. A bad sharp stabbing that instantly set my heart aflutter.

A small shard of glass had magically appeared in the middle of my kitchen floor from some alternate evil universe...and damned if it didn't puncture the bottom of my foot. I hobbled to the bathroom with blood running down my sole, mopped up, slapped on some hydrogen peroxide, checked to see if there were any remaining chunks stuck in the new hole in my foot, and then popped a band-aid on it.

That sounds like a calm, rational reaction but the reality was far from that. I've been well-trained by endos and CDEs over the years, and so I do not take foot wounds lightly. And by that I mean I kind of spaz out, flapping my arms around, thinking "My foot! My foot! I cut my foot! OMIGOD I CUT MY FOOT!!! BLOOOOOOOOOD!!!"

Nothing is red or pus-filled today, so I'm going to just hope I got it cleaned out and everything's hunky-dory. Um. Well, and more than likely take deep breaths to stay calm, obsessively check the bottom of my foot, probably buy another vat of hydrogen peroxide, and routinely ask B look at it to make sure he doesn't see any red streaks either. Our little sojourn to Pittsburgh should make this all a lot more fun for everyone, but my timing sucks in most things.

And for the record, the wonder Band-Aid? The one that's stuck to the sole of my foot since this morning, through a flip-flopping commute to Manhattan on the Q train? Well that would be the Rite-Aid brand clear dots - the very same I use on my belly to cover infusion set holes.

Monday, August 2, 2010

I don't know about you, but right about July I start getting a little tired of popsicles. It's not that I can't have ice cream - I can and I do, but it ain't easy if you're trying to go easy on the carbs or MEF factor. (Ice cream and pizza, sitting in a tree....) Other desserts taste great, but nothing quite hits the spot on a hot summer day like some icy cold treat.

D-friendly Graham Crackers & Whipped Cream sandwich: In lieu of ice cream, press a small amount of whipped cream between two crackers, wrap in plastic or parchment and freeze! Whipped cream can be something like Cool Whip lite, or the more simple version of heavy whipping cream and a packet of Splenda.

This post also included frozen rice pudding, fruit, and soda - all of which could be sugar free and diabetic friendly. I can't wait to try it out!

Thursday, July 29, 2010

I submitted a boatload of logs and Dexcom graphs to my CDE yesterday, including the horror show from the bridal shower. Our exchange:

CDE: Looks good, let’s try to fix that persistent later day low…what are your current carb ratios?

Me: We're currently at 12:00a - 11, 12:00p - 10, and 5p - 12

Also, could you take a peek at the hourly trend Dexcom report? At 7am, my median is 90...and from 8am to 9am it's way up around 132 and 139 and then it drops again. It's the highest my median goes and it's driving me bonkers - I get this spike every weekday, but I'm not eating anything, it's not from unhooking for a shower, and it doesn't happen on the weekend. I'm assuming it's a stress reaction to rushing around to getting to work, so it probably can't be eliminated, but I wonder if you have any tips to manage the spike? Currently, I do a .3 pre-shower bolus and then put my temp basal on 112% for an hour when I hook back in 20 minutes later. This morning, I had to do an extra .6 bolus after my shower...and I still went from 71 at 7:30am to 146 right before 9:00. That's a 75 point jump! I'd consider that a failed meal bolus, so I'd love to wrangle it down. Any tips you have would be awesome.

CDE: Ok, change the 5 pm to 11 as well…I think this is driving those lows!

Me: Mmmm....so shouldn't I raise the ratio to 13 if I want to do less insulin?

CDE: Oh geez, I meant 13!

Looks like I need to just suck it up, read my Pumping Insulin book, and start making my own changes. I don't want to do this on my own, but people just don't quite seem to be listening or paying as much attention as I am.

Tuesday, July 27, 2010

I wanted to post this recipe for Dfeast day in addition to my splendiferous mac 'n' cheese and diabeticpastas, but I got a bit busy and never got to do it. Doesn't mean I can't share now, however!

Since I stopped eating meat, I've been basically relearning how to eat as a PWD. Lots more carbs and a lot more work to ensure I get enough protein and other nutrients. Enter quinoa. This magic food is the best thing that's happened to my taste buds and/or kitchen since my French press -- versatile as all get-out (good for savory OR sweet dishes, it can be used as pilaf, salad, breakfast cereal, whatever!), this fancy-pants grain is high in protein, iron, and fiber, is gluten-free, and has balanced amino acids for us veggie types. Wonderfood, amiright?

Also, for those of us without massive heaps of kitchen skillz, it's also super easy to prepare. My method below is a little loosey-goosey, but I honestly don't think you can mess this stuff up. It's like a more resilient and flexible kitchen-sink pasta dish!

Quinoa:
1) Put quinoa and water into a pot -- 1 cup of grain for every 2 cups of water (I actually skimp and do 1 3/4 cups of water, as I like it a little more nutty/chewy than wet) -- and bring to a boil.
2) Add 1 tsp of olive oil to prevent sticking, cover, reduce heat, and leave to simmer while you go take care of veggies. Quinoa will absorb water and get the fancy curlicues in approximately 15 minutes.
3) Stir occasionally, and remove from heat once water is absorbed.
Note: You can also add bouillon or use broth -- I prefer to add flavor with my add-ins.

Veggies:
1) Defrost/heat your spinach in the microwave while you sautee your onion and garlic in olive oil.
2) Once the onions go translucent, add spinach to your sauteed tastiness.
3) Dump the cooked goodness into the quinoa.
Note: You can also use fresh spinach, and wilt by adding to the onions and garlic.

This stuff is seriously amazing. I've also used vegan bouillon and added mixed veggies, tweaked with lemon juice, did a version with chunks of bell peppers -- the possibilities are endless. The only thing that seemed to consistently matter was the texture of the quinoa, and that has everything to do with making sure you don't use too much water.

Give it a whirl! Carb counts will vary with the veggie/quinoa ratio, but this crazy website (wealth of data here, folks) puts it at 39g of carbs per cup of grain.

Monday, July 26, 2010

I've had diabetes for more than 16 years. In all those years, my D has been mostly a long-running show of daily baloney (shots, infusion sets, what-have-you) that I could handle on my own or routine doctor visits to get my A1c, an eye exam, or something else rather run of the mill for your average PWD.

I've heard other people's horror stories of lows where they couldn't take care of themselves, glucagon kits being used, waking up in the hospital, 911 calls, on and on with all the terrible things that we all worry about and try to prepare for. And I, too, have done the worrying and the preparation. I have glucagon kits, I wear my Dexcom religiously, I do fingersticks before driving or going to sleep -- I take all those steps. In the back of my head, though, since I've never come close to having something terribly scary happen, I always wondered "What cataclysmic event would need to occur for that to happen to me?" You see, since I'd gone 16 years without a life-threatening D episode, I guess I figured I'd just keep dodging that bullet -- I was a lucky PWD, apparently, and this wasn't something that would actually ever happen.

And then there was yesterday.

I spent the majority of the day at a bridal shower for a dear friend of mine -- lots of celebrating, lots of food, lots of prosecco. Unfortunately, there was also a rather persistent mountain on my Dexcom. My BG was coasting for hours in the mid and upper 200s and, instead of waiting patiently for the insulin on board to do its job, I made the stupid mistake of rage bolusing...in a stack.

At the end of the party, I'd become rather weepy -- I'd chalked it up to the high emotion of the event, but everyone else was rather sure I was drunk. My slurring and inability to walk in a straight line probably confirmed their suspicions, and even I'd have said I was feeling a little tipsy. Not drunk, of course, but tipsy. And that should have been my clue that something wasn't right. Everyone was acting like I was far more drunk than my actual prosecco consumption warranted, but I just decided they were being silly and I left with my ride for the train station. Without doing a blood sugar beforehand.

I don't know what my blood sugar was when I got in the car. I don't know what it was for the first ten minutes of that ride. I was just fighting to stay awake, thinking maybe I was a little more tipsy than I thought. When my poor brain finally thought "Hmm. This is BAD. Maybe we should do a blood sugar," I was at 39. Trying to stay upright, trying not to scare the poor girl who got stuck driving me to the train station, I scarfed tabs as quickly as I could without gagging. Fifteen minutes later, I was at 35. More scarfing, and now I'm panicked because I'm just so very sleepy and those tabs are gross and all I wanted to do was close my eyes. But part of my brain knew that would be a very bad idea. So I tested again -- 39 -- and, out of tabs now, started scraping frosting off the cupcake I'd brought home for B. At this point, my friend is worried and asks if she should drive me to the hospital. Obviously, since I'm not a PWD who needs the hospital, I say no, I'll be fine, let's just get to the station.

It's all very hazy now, of course. I remember that drive in little bits, like a dream that's just on the edge of your memory when you wake up. I know I was dropped off at the station, I know I bought apple juice, I know I called B all upset, I know I got on the right train and exited at Grand Central. I don't remember how I did those things, I just know I did.

I also know that B was waiting for me when I arrived in Manhattan, and I couldn't stop crying when he found me. I'd narrowly avoided something horrible -- I felt that in my bones -- and I was scared.

I have rerun the scenario in my head a thousand times now, and I know there were countless opportunities to prevent what happened. I made huge mistakes yesterday, and have learned a valuable lesson from the whole episode: I'm not a PWD who doesn't need the hospital -- I'm just a PWD who hasn't needed the hospital yet.

Friday, July 23, 2010

I've become a nesting fool, and Real Simple magazine is one of the ways I scratch that itch. A couple winters ago they published a series of recipes for comfort foods with a healthy twist -- ways to make the foods you love to eat a little less bad for you. The one I tried and loved -- B did, too! -- was Macaroni and Cheese with Cauliflower.

Not that this is a diet recipe, of course -- there's plenty of cheese for us cheese hounds, and warm deliciousness for when the weather goes to crap. But it was nice to use whole wheat macaroni and slide some veggies into a dish that wasn't born that way.

I've provided the text below and the link above (commenters offered a couple tweaks I've yet to try). My own tweaks? I used ready-made breadcrumbs rather than bread, thereby eliminating step #2 of the recipe as well as a need for fresh parsley, bread, and a food processor (which I don't own). Also, I think I'd only use half the recommended Dijon the next time I make it - the mustard gave a nice tang, but I found it a bit overpowering.

Directions
1) Heat oven to 400° F. Cook the pasta according to the package directions, adding the cauliflower during the last 3 minutes of cooking time; drain.

2) Meanwhile, pulse the bread in a food processor until coarse crumbs form. Add the parsley, 2 tablespoons of the oil, and 1/4 teaspoon each salt and pepper and pulse to combine; set aside. (Optional step - you can use ready-made breadcrumbs.)

As I mentioned earlier this week, I had an endo appointment on Monday. I went to the center armed with lists, questions, and - I hoped - the gumption to tell my doctor what's what when it comes to my diabetes management.

We got off to a rocky start -- she had to hunt me down in the office. My BG had tanked down to the 40s and I'd had to abandon my spot in the waiting room to grab some crackers. (Shame on me for only having one glucose tab in my purse.) Obviously my endo's office is the best place in the world to have a tanking blood sugar, but it was still a little awkward. My mouth was all full of cracker when she found me, I was stuttering and losing my train of thought, I dropped all of my Dexcom graphs on the floor of her office, and I felt embarrassed -- not to mention a little less "Listen to me!" full of authority and self-confidence than I'd wanted for this particular appointment.

It turned out all the flustered low ridiculousness -- and all my preparation -- was besides the point. My A1c came back at 6.2. She gave an "explanation" for where that .6 went from my June blood draw, but it sounded like a bunch of hooey about test sensitivities blahblahblah. Not that I was going to complain about a .6 drop in my number - I was pleased, and even more so when she said that meant we were basically where we wanted to be. Just one last leeeetle tweak for the next few weeks: overnights.

Apparently, I sleep a lot. ("Not that that's bad," she hastened to add when my expression turned to one of shock and horror at such a statement.) And all those hours in sleepyland with BGs that aren't awesome means an uptick in my A1c. My numbers are steady throughout the day -- "impressively steady" enough that she can't tweak them down any more -- so all my work has to be done on my overnights.

Like any PWD, I knew where the work needed to be done. I live with my numbers day in and day out, and I knew where I had to be a little more rigid. My marching orders now are to implement that rigidity -- the doc said they try really hard to be accommodating and make life for PWDs as normal as possible, but "This is not the time for that" for me. So that's my new mantra. I'll be putting little sticky notes up all over the place to remind me of that, to help underscore the fact that there's a goal I'm working toward and this maniacal level of attention paid to my disease is not going to last forever. But until that goal is hit, there's Karen's New Night Regime, which includes

mantras on Post-its

iron-clad rules about how late I'm eating and what I'm eating late

submission of Dexcom overnight graphs to see what my BGs are doing

rounds of 3 a.m. fingersticks to make sure my basals are all aces

I'm sure KNNR will grow and adapt as time goes on, but it's nice to have a proactive plan again. Just like I'd been all prepared to demand in the first place.

Thursday, July 22, 2010

I've been struggling with my morning bump lately - it drives me freakin' crazy. This morning was a successful experiment, and our IM conversation from this morning pretty much sums up why he's so awesome to have around:

Monday, July 19, 2010

Today is the dreaded endo appointment. I tried to spend my weekend not thinking about it, but got a giant red F for my efforts:

I spent a large chunk of last night preparing for the big day (after two days just running over this crap in my head, hence the red F):

Printing out logs and filing them in my lovely green binder from Target - check!

Monkeying with Dexcom software so I'd have something to wave at the endo when my A1c doesn't match any of my data just like it did in June - check!

Snapping at poor B because I find all of this overwhelming and horrible - check!

Writing my list of prescriptions that need refills - check!

Reviewing my questions about meter accuracy (screw you, OneTouch), number of finger sticks a day, and a million other things - check!

There's just one thing my gut doesn't feel like it's checked off my pre-endo appointment list, and that's getting up the gumption to put down my foot with my doctor. I've never been very good at confronting anyone, and certainly not authority figures. Still, someone needs to stand up for me and tell the doc what's what: What happens if I can't get below 6.0? Why do I feel like I'm the only one who's concerned that I'm not moving in a downward A1c direction? Why didn't you know I'd been submitting logs to my CDE daily? What's our plan of action moving forward? Where is the line between my self-care and what my CDE is supposed to be doing?

I think what's eating at me most is that I've gone on the pump and CGM, I'm wearing my cyborg gear 24/7, I'm logging everything I do, and yet I feel less in charge of everything than I did last summer when I was doing MDI - and my A1c reflects that. What does that mean for me? Is it a failure on my part to get back in the driver seat once I learned my new gadgetry? Is it a failure on the part of my health care team to help me "learn to fish"?

Let's remove the word "failure" altogether and focus on fixing things. What steps should I take so I can once more feel like I know what the hell I'm doing? Will my team support that effort, or does that verge into renegade territory? What's the point of logging and sending all that crap to my CDE if I don't 100% trust her decisions on where things should be moving and I want to be able to make those decisions myself?

I'm nervous about the appointment on a numbers level, of course - I always am. But having to stomp my feet and basically reset the agenda? This is not in my wheelhouse, and I'm not 100 percent convinced I'm going to get my point across and have the endo actually hear me. And if she doesn't, then what?

Thursday, July 15, 2010

They're very popular during our office's late-afternoon Sbux run, and I've always been curious about them - what's not to love about a not-too-bad-for-you coffee "milkshake"? Today, as the omigodthisisthelongestdayever hour of 3:00 approached, I decided I'd try one out.

I did some carb research before I went on the Starbucks website, and I've gotta say I was a bit stumped. A grande light coffee Frappuccino - described by Starbucks as "a delicious blend of coffee, milk, and ice" - had 27g of carbohydrates.

me: Um. I'm diabetic. I just need to know if there's sugar or if it's just coffee and milk like it says on the website.

barista: There's the coffee base. I think that might have some in it.

me: Uh...so if i ordered a light coffee Frappuccino I'd be getting...?

barista, grinning with understanding: Our Frappuccino with the least sugar in it.

Feeling like I would never get out of that insane conversation loop, I just ordered the darn thing. My takeaways? 1) Ten levels of frustrating: Bonus points to the helpful barista, but Starbucks's frakking website should have more detailed - AND ACCURATE - information. 2) The thing wasn't worth the hassle, as my usually sugar-free tastebuds didn't quite love all that tongue-shriveling sugar. 3) Dex says that - so far - their posted carb count info is at least correct.

Thursday, July 8, 2010

I leave shortly (why am I on here posting?!) for a bachelorette weekend on Lake George. I'm sure there will be many antics and hopefully my BGs will stay in line - not off to a great start, though. A 222 BG when I woke up, and I've finally swapped out my insulin bottle - I've been struggling too much to keep things in line and that jump is completely inexplicable. Let's hope the NYC heat wave's to blame and a fresh bottle will settle things down.

I'm bringing my logs, I'm going to try to play DD for as much of the trip as possible, and hopefully my pump or Dex won't be taking a swim...keep your fingers crossed!

Tuesday, July 6, 2010

My Advanced Carb Counting class came and went on Friday. My ridiculous nerves resulted in a fun little BG pop that afternoon, but such a thing was completely unwarranted. First, I was wicked pleased with my CDE - she put on a good show and, more important, managed to be completely non-judgey or overly strict about eating habits and carb-counting skills. That's no easy feat, and it was nice to be reminded why I liked her so much in the beginning - right now, our relationship is mostly anxiety on my part (GOD, I hate this logging! Will I ever get the A1C I want? I had popcorn for dinner Thursday and was up at 187 1.5 hours later - what is she going to say?!) and almost relentless good cheer and endless number-tweaking on her part. And as much as I need the "Go team!" cheerleading, it can also be a bit maddening. Skip the "We'll get it next time!" lady - how about "No, I have NO idea why that number came up. This disease is idiotic."

I'm sure the other people in the class were also happy with her "If you don't get it right, it's not the end of the world. Just use the info for next time" attitude. I know I would have much preferred her to Evil Nan from 1993.

The first half of the class was a little more beginner than I'd expected, but I suppose any good class has to mention the basics at the outset just to make sure all participants are on the same page, right? So it was off to a bit of a slow start...and then I was met with the crushing "WHAT?! No plastic fruit?!" disappointment. I think I'd taken that "advanced" a bit too much to heart, and had expected a lot of Guess the Carbs food sitting everywhere.

Instead, we had a PowerPoint slide show and my lovely CDE. That being said, it turns out you can pick up quite a few tidbits that way. So here are my New to Karen carb counting tidbits:

When food logging for endos or CDEs, be sure to include any food brand names, as well as the source (homemade, cafeteria, deli, restaurant, prepackaged, frozen).

8oz of meat - dose for 15g of carb. (Regular serving is that 3-4oz deck of card size. Apparently, doubling it requires some insulin.)

Eyeballing aids: soda can = 1.5oz, baseball = 1c, ice cream scoop = 1/2c, spread hand = 8" diameter (for wraps, etc.), palm width = 4", deck of cards = 3-4oz of meat. Now obviously we're all different sizes, and this needs to be just a guideline. That being said, it makes me want to go measure all my body parts so I can use them when eating out: "Waiter! Would you say this potato is bigger than my elbow?"

Dual wave bolus: recommended 2-3 hour square. I'd been doing 1.5 to 2, and am now looking forward to a pizza showdown on Thursday in Schodack.

Carb info: Calorie King, of course, but also the USDA. Makes sense, but who'd have thought it?

Carb loading: Any meals over 70g of carb or so - regardless of fat content - is going to act more like a MEF. She mentioned bagels and how they "just keep going!" Bolus accordingly, kids. And hey! Try 2 to 3 hours for that square....

All interesting tidbits to say the least, and then she whipped out her Eating Out guide. I think I'm going to write these down on a card to keep in my wallet. You all might already do that, but I'm a little slower on the uptake!

1 pint of fried rice: 110g

Sushi roll: 5-10g per piece (the lower end is for 8-piece rolls, and it goes up as your rolls get fatter)

New York pizza slice: 60g (CDE: "They must have really small slices elsewhere in the country! Most guides say 40g")

She had other tips, too, but I could never use them. My basal is so low at this point that my cat farting in the next room causes a BG spike, so I'm way too sensitive to be able to not dose for salad (even 5 or 7 carbs from a side salad) or alcohol (which is tricky math, but ALWAYS requires an up-front bolus for me).

Albeit imperfect, it was informative and I'm glad I went. Aside from the carb info, I also got to talk to her in person about some logs, and it was good to see how she went through the numbers and why she gave the advice she did. For example, she is WAY more aggressive about lows than highs, which I found aggravating since it doesn't help my A1C when all we worry about is the lows. But she was worried about them because they screw up the data for the entire day, not just for my safety. I can get down with that.

I want to take her out to dinner now, of course, if only to see if we could have a Carb-Off - a Wild Wild West sort of scene in which we both "draw" our carb guesses and see who gets shot down. She might win (she's the professional after all) but I'm confident I'd get a shot in.

Friday, July 2, 2010

I don't think I've had a plastic-fruit session since my diagnosis at the age of 15...and it's been a lot of years since I was 15, folks. Like most PWDs, I can SWAG bolus with the best of them. I'm a fan of certain packaged foods (like my super hippie whole wheat bread with flax) that have carb counts handily printed on the label, and I'm a diligent food-weigher when I'm making my lunch at home. But when your daily BG averages need to come down by a just 10 points or so, let's just say that the ol' S needs to get a leeettle bit more scientific.

My endo's office provides classes on a whole range of topics (I loved both their Considering the Pump? and the one on CGMs - super helpful), and carb counting happens to be one of them. I am unclear what the class will entail, but am coming with a notebook, my log binder, and an anxious stomach. There's something about this that just dredges up a whole bunch of issues. Obviously, food's a big one of them as it is for many in the community and has been for me since college. There's also the issue of learning you're doing it wrong, when you've been doing JUST FINE all these years, thankyouverymuch. Plus, I really do just hate the nutrition stuff (no, I'm sorry, I'm not going to eat just 4 pumpkin seeds for a snack just because then it can be considered "free"). And there's the awkwardness of the fact that it's being taught by my CDE - will she judge my logs now? Is this going to affect the way we interact when she looks at my info? Will she not trust me and my carb estimates? What if she sucks and now I don't trust her?!

I'm going to try to keep an open mind. I'd love to pick up any tips I can, and I know that I got a great deal out of the nutritionist at the ACT1 speaker series - I'm hoping that I'll come away feeling like I've learned something and that I'm better armed to get my BGs even lower.

Thursday, June 24, 2010

I have eaten so many of these things in the past three days that my tongue feels all strung out, a little hurty, and totally gross every time I pop another one in my mouth. Kind of like when I was a kid and I devoured a whole roll of Sprees every time we went to the movie theater.

Oh, the beauty of working in book publishing! I finally started Elizabeth Strout'sOlive Kitteridge, which I picked up a few months ago at the office. I'm not terribly far through it, but I can confidently say I think I'll end up loving it to little, tiny pieces. Beautifully written and heartache-inducing - I got off the subway this morning with a vague ache behind my sternum. A physical reaction to reading is always a sign of a good book....

Wednesday, June 23, 2010

Disclaimer up front: No judgment either way on the numbers, folks. If I didn't have a very, very specific A1c goal - and been putting in a lot of blood, sweat, and tears to reach it - I would not be squawking about my results.

I had my blood drawn for an A1c last Monday. I was fiercely nervous, as this test was going to be the "Am I working hard enough?" gauge for the future - my A1c in March was a 6.4 and since then I'd started intense daily logging, using my kitchen scale (!), and seeing a lot of lows. My meter's 7-, 14-, and 30-day averages were all under 120 - that's an amazing eAG! All of these were signs that, to me, meant even if I didn't achieve the insane sub-6.0 I was aiming for I'd likely get a better than or equal to that 6.4. Yay me!

Or so I thought.

Instead, after many emails to my CDE and endo trying to pin down whether the results were in as Quest said they would be, I got this from my doctor while I was sitting on an architecture boat tour on the Chicago River: "The HbA1c went up a bit to 6.8%, so please start sending records for us to review." My instant reactions:

1) Of course I started crying. The huge wave of surprise and disappointment was a lot to handle all at once. Thankfully, it was sunny and I was wearing giant sunglasses - otherwise, I would have expected awkwardness with the tour guide: "...and note how the triangle is echoed at this apex, as well. New Yorker lady, are you CRYING?! I know Chicago has the best architecture in the world, but New York's isn't that bad!"

Chicago does look pretty amazing, doesn't it?

2) "Start sending records"?! WTF? I've been sending records to my CDE - my case manager who is supposed to be in daily contact with my endo - since April! How in the hell does my endo not know this? Either she doesn't see them OR she just randomly dashes emails off to patients and forgets who does what. I dislike both of these scenarios.

3) How is this even possible? With all the work I've been doing and the averages on my meter, how could there be such a gigantic discrepancy? I know the DOC talks a lot about tech accuracy (for good freakin' reason, obviously), but this is insane even for One Touch meters. Isn't it?

4) Who the hell says the full "HbA1c" any more?

I managed to have fun during the rest of our trip (thanks to B, of course, as he's the world's best traveling partner), but my brain never really stopped hopping back and forth between #3 and the idea that If all that work only got me a 6.8, what the hell will I have to do to get a sub-6?!

What dinner with a sub-6.0 A1c looks like

And that little brain-hopping act is where I've been since then. At least it was until last night, when I uploaded my Dexcom and apoplectic rage kicked in.

See, I'd been operating under the assumption that it was meter/Karen error. I was only taking BGs at the wrong time and hadn't logged an accurate picture, or the meter was off enough that I wasn't as tightly controlled as I thought. However, for the range of time between my A1cs (March 15 to June 14), freakin' Dex also said my average was in the low 120s. Which agrees with my meter BGs AND includes all the crap mountains and molehills in between said BGs.

I'm left sitting here, sputtering and ranting like some crazy person on the subway, furious and confused and feeling completely helpless. If my machines and logging and work with the CDE have zero correlation to the A1c, what the hell is the point of any of it? How can my management be judged on a number that I can't relate to/sync with day-to-day, rather than all the data I accumulate as the hours roll by? You wouldn't give someone a map of Atlanta to help them out on their trip to San Francisco. You wouldn't tutor a kid in geometry for his algebra class. You wouldn't learn French for your upcoming trip to Italy just because "they're kind of similar." How the hell are we supposed to achieve the kind of self-care we want to ensure our health now and in the future if the tools we have to do so fail to relate to the tests the medical field uses to judge that self-care?

Hi there.

I'm Karen. I'm a PWD - Type 1 diabetes, to be exact. I live in Brooklyn. I obsess about things. I have a husband, a darling little girl, and two cats (all awesome). I read a lot. I love coffee (a bit too much).